Trust in Retinoblastoma Care: Understanding Parent-Physician Relationships in Collectivist, Low-Resource Settings.

Abstract

Background: Retinoblastoma is an aggressive intraocular malignancy predominantly affecting young children. In lower- and middle-income countries (LMICs), late presentation and limited resources often lead to poor outcomes and intensify the emotional and decisional burden on families, making parent-physician trust a critical determinant of treatment adherence, decision-making and outcomes. Yet, the mechanisms by which trust is built and sustained in non-Western, collectivist healthcare contexts remain poorly understood.

Objectives: Grounded in Sisk and Baker's interpersonal trust model, this qualitative study explored (i) barriers and facilitators to trust in parent-physician communication during retinoblastoma care and (ii) parents' and physicians' experiences of trust across diagnosis, treatment and follow-up.

Methods: Six physicians and 15 parents of children with retinoblastoma participated in three separate focus group discussions (FGDs) at a tertiary ocular oncology centre in southern India. Thematic analysis, informed by Sisk and Baker's staged trust model, was applied to the FGD transcripts.

Results: We coded data to three stages: (1) Initial trust cues: highly regarded, transparent and approachable physicians establish foundational trust; (2) Demonstrated trustworthiness: multilingual, culturally inclusive communication reinforces trust; and (3) Cyclical trust maintenance: collaborative, interdisciplinary team-based care that honours parental insights sustains trust over time.

Conclusions: Trust-building in Indian retinoblastoma care is shaped by collectivist relational norms, linguistic plurality, and systemic inequities that extend beyond existing Western models. These findings highlight the need for culturally adapted communication training, multilingual decision-support resources and language-concordant interdisciplinary staffing as standards of care in LMIC retinoblastoma-care settings. Prospective, multi-site research is needed to validate these findings.